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Wednesday, June 29, 2005

This illness isn't going away

Philadelphia Inquirer
By Harvey L. Kliman

Lyme disease has reached epidemic proportions in Pennsylvania, particularly in the Southeastern region, which accounts for about 60 percent of the cases statewide. In 2003 and 2004, the state moved into the top spot in cases of Lyme disease, with 5,161 and 4,541 cases reported to the federal Centers for Disease Control and Prevention. With the CDC estimating that only one-tenth of the actual cases are reported, this would mean that we have about 45,000 unreported Lyme cases in the state each year.

Nationwide, 18,000 to 24,000 cases are reported to the CDC annually - which projects to about 250,000 total cases under the agency's estimates. This makes Lyme the nation's top insect-transmitted disease. Every year Lyme infects six times as many people as does HIV.

Lyme disease is an infection, most commonly contracted from a tick bite. It may initially cause a flu-like sickness. Untreated, or inadequately treated, it may cause long-term, persistent illness.

Symptoms of Lyme disease can be any or all of the following: joint and or muscle pain, joint swelling, headaches, numbness, tingling, shooting pains, memory loss, brain fog or confusion anxiety, panic attacks, extreme fatigue, and attention-deficit disorder or attention-deficit hyperactivity disorder in children.

There is no definitive test as of yet that can prove a person is cured of Lyme disease. Today's tests serve only to support the diagnosis and are not accurate enough to rule out the disease. The most common test is the ELISA or Lyme titer, which is only 65 percent accurate at best. This is not good enough to rule out Lyme disease in a patient with symptoms.

Greatly increased national funding is sorely needed to develop a new definitive test for Lyme disease that will give both patients and doctors increased confidence in diagnosis and progress in treatment.

Fortunately, national attention is being focused on the issue. Congress is addressing the problem with proposed legislation that would provide money for research and create a medical/citizen advisory committee to help coordinate research across the several government agencies working on infectious diseases.

Our organization, the Lyme Disease Association of Southeastern Pennsylvania Inc., along with more than 80 other related organizations, is urging support for House Resolution 2877, sponsored by U.S. Rep. Christopher H. Smith (R., N.J.)

If treated within a day or two of a tick bite, Lyme disease is often cured with three to four weeks of antibiotics. But many patients do not get well with that treatment and may require months or even years of multiple antibiotics to recover. These patients and their doctors need to be allowed to complete whatever treatment the doctor believes is required for symptoms to resolve.

The Pennsylvania House of Representatives recognizes the seriousness of Lyme disease in the state and has passed House Bill 1534. The bill would require that insurance companies provide coverage for long-term treatment judged to be medically necessary by a physician.

Now, many insurance companies do not cover long-term treatment, especially intravenous antibiotics, even when deemed medically necessary by a licensed physician. Patients suffer long-term debilitating illness as a result, when they cannot afford the necessary treatment.

Last legislative session, the Lyme bill was killed in the Senate Banking and Insurance Committee. This term, the bill has again passed the House and is waiting for action in the same Senate committee. We are urging residents to contact their state senators in support of this bill.

Though the legislation would help patients, it may cost insurance companies more money in the short run. But if patients are not treated as long as is necessary the first time they get Lyme disease, the long-term costs can be much greater, both in money and patient suffering.

We in the Lyme disease support community are baffled as to why it is taking so long to get state and national support for the hundreds of thousands of Lyme disease patients suffering today. With your support, we can move toward solutions.

Harvey L. Kliman, Ph.D., is president of the Lyme Disease Association of Southeastern Pennsylvania Inc. (www.lymepa.org) and lives in Chadds Ford.

Monday, June 27, 2005

CDC: Pa. Ranks No.1 In Cases Of Lyme Disease

WGAL
Pennsylvania had more cases of Lyme disease than any other state and the national Centers for Disease Control and Prevention said the number is rising.

The CDC said Pennsylvania had 5,730 cases of Lyme disease in 2003.

The state had 27 percent of the national total and an increase of 44 percent from 2002.

The president of the Central Pennsylvania Lyme Disease Association said rural sprawl and Pennsylvania's outdoor activities such as hiking, camping, hunting and fishing put people in the direct path of the main carrier of Lyme disease, ticks.

State tops nation in Lyme disease cases

2 entire families in midstate suffer from illness
The Patriot-News - Pennsylvania

At the worst stages of Gail Sheffer's Lyme disease, a short trip to the mailbox exhausted her.

"I could not walk to the mailbox without taking a two-hour nap when I walked back to the house," the Wellsville, York County, woman said. "I would be sleeping 12 to 18 hours a night."

Sunday, June 26, 2005

Living with Lyme disease Debilitating infection taking hold in Vermont

Times Argus - Vermont
Bernadette Rose used to swim before work. After work, she'd kayak, have dinner, grocery shop and then tackle laundry. Today it's rare that the Barre woman makes it through the day without a nap.

Michael Pockette could play seven games of softball in a single day. Today, a game on his Proctor lawn with his 5-year-old daughter is about all he can muster. But he's lucky. Unlike Rose, he's been able to return to work.

Paula Sagerman works part time at her Wilmington home. She used to hike. Today, she can't walk uphill without exhausting herself.

Each has Lyme disease, or a Lyme-like disease, a debilitating, sometimes chronic illness spread by deer ticks that can devastate lives and bank accounts and is far more prevalent in the state than even some medical doctors believe, according those with the disease and the Vermont Department of Health.

That lack of awareness in the Vermont medical community leaves the illness arguably under-diagnosed or misdiagnosed, and consequently patients are going to out-of-state doctors who are able, or willing, to diagnose the disease, which commonly causes arthritis-like joint pain, muscle aches, extreme fatigue and memory problems.

Pockette experienced all of those symptoms. He'd forget where he was driving or what he was retrieving from across the room at his job as a machinist at General Electric. He was taking time off because of fatigue, was about to lose his job because he had used up all of his sick and vacation days, had slipped into debt because of lost income and was becoming increasingly weak and overwhelmed by pain.

"My doctor's office thought it was all in my head. 'It's stress,'" he said he was told. "I was seeing a psychologist and was on antidepressants."

More than four years went by before Pockette's mother-in-law convinced him to seek help from a New York doctor, who finally diagnosed his health problem as Lyme disease.

Sagerman was also diagnosed by a New York doctor, and Rose found help in West Lebanon, N.H., after years of illness.

"I was so excited to find out I was sick, and it had a name, because by then I was having difficulty walking. I was having difficulty using the stairs," says Rose. She had to write herself notes to remember what she was doing or where she was driving. Rose says she is still plagued by the illness because she went without a diagnosis for so long.

The Department of Health is now engaged in a campaign to educate the public and medical community about Lyme disease and its prevalence in Vermont.

The disease was discovered in the 1970s in Lyme, Conn., where children were suffering arthritis-type symptoms. It is spread by infected deer ticks, also called black-legged ticks or Ixodes scapularis, which are active from May to October. Those ticks are now known to be in Vermont.

"We have the right tick vectors here … and in fact we have Lyme disease here in both the northern part of the state and the southern part of the state," Department of Health epidemiologist Patsy Tassler says.

Last fall, the state collected ticks from two Vermont locations – a Lake Champlain island site in northwestern Vermont and three sites in the Manchester area – by dragging corduroy material over foliage and along trails. The harvested ticks were sent to a lab in Maine for testing.

Of 69 ticks collected and tested from Butler Island, 34 of them, or 49 percent, tested positive for Lyme disease, Tassler says. "We think that the situation on (all) the islands is the probably the same, or similar," she adds. "That's higher than I think we expected and I think most people would expect." The state has met with camp owners and town officials from Butler Island about the test results.

Of three sites in Bennington County, one had no ticks that tested positive for Lyme disease, at the second, about 9 percent were positive and at the third, nearly 21 percent tested positive for the disease.

An Agency of Agriculture lab in Waterbury will begin testing ticks this year.

"We've been collecting them. Once we have enough, we'll test them," says Agency of Agriculture entomologist Jon Turmel.

The testing is needed, he says, "because we're seeing more and more ticks, we're seeing more Lyme disease, especially in dogs, and to educate people that Lyme disease is out there. Even the physicians don't believe there's Lyme disease.

Tassler agrees. "Lyme disease is definitely in Vermont. Vermonters can get it here," she says.

The state can't accurately say how many more ticks are in Vermont. Veterinarians two years ago announced larger numbers of dogs testing positive for the disease as ticks adjust to Vermont's climate and their numbers increase.

Caledonia and Essex county forester Stephen Slayton has worked for the state for 34 years. Slayton recalls seeing ticks on rabbits he hunted as a child in 1957. "(That was) the last time I saw ticks until just recently. They're something new."

Slayton, based in St. Johnsbury, says he has started seeing ticks over the last three to five years, particularly in Lunenburg, Guildhall, Concord, Wheelock and Groton. He says checking himself for the insects after leaving the woods has become part of the job.

The first 30 deer brought to each of the state's 18 check-in stations during hunting season are checked for ticks and veterinarians send them in to the state be identified, says Trish Hanson, forest protection entomologist for the Vermont Department of Forests, Parks and Recreation. The state has eight common tick species, including deer ticks, woodchuck ticks, American dog ticks, brown dog ticks and lone star ticks.

"The percentage of deer which have them has gone up a little bit. It's not a really scientific study," says Hanson, noting tick collections from the deer aren't an accurate reflection of the number of ticks in Vermont because some people are better at finding ticks on the deer than others.

Human cases of Lyme disease leapt from 16 cases (14 contracted outside of Vermont and two within) in 1994 to 50 (28 contracted outside the state and 22 within) 10 years later in 2004. The 2004 results are still preliminary. Physicians and labs are required to report Lyme diseases cases to the state. Tassler says the numbers are likely up both because of increased tick numbers and higher awareness, but likely do not reflect the real number of people carrying the disease.

"Lyme disease may be under-diagnosed in Vermont," she says.

If diagnosed early, antibiotics can usually cure the disease. Left undiagnosed, long-term antibiotic therapy is needed.

Pockette says he thinks he contracted Lyme disease in 1999 on a new softball field built on a former deeryard in Orwell.

"After the playoffs, my wife noticed a bruise on my back. I don't bruise that easily," says Pockette, who now believes the "bruise" was a bite mark.

The following spring when Pockette donned his softball glove again, he found himself tired and barely able to get through a game. The next year, a half of a game was all Pockette could play. The third year, "I just retired from softball," says the 44-year-old who was once in great shape. "Some days I wasn't able to go to work. There were a few times I actually collapsed at work."

He was as forgetful as he was weak. "I could literally read the paper three times in a day and it'd be a new paper to me," says Pockette. He spent six months completely out of work on antibiotics and building back his strength after being diagnosed.

Sagerman researched the disease on the Internet and eventually found her way to an online support group for Vermont Lyme diseases sufferers (available through www.vermontlyme.org) and asked site members for a doctor's name who could help her. Those with Lyme call doctors who understand the disease "LLMDs," or "Lyme-literate doctors."

Rose got so she couldn't sleep at night and was exhausted during the day. "I felt confused. I couldn't do things I used to be able to do," she says. "My life fell apart. All my relationships fell apart."

Her symptoms were attributed to depression, anxiety, overwork and even what she calls her eccentric nature, until she met Dr. Rex Carr, a physical medicine and rehabilitation specialist in New Hampshire.

"The level of controversy on this illness is huge," Carr says. "It can be a very serious illness. It can cause death. It's very unusual, but there are, indeed, people who get an acute infection and they die."

Marge Wells of Montpelier spent four years on antibiotics for Lyme disease before feeling "normal" again. "It has been one year without antibiotics and I have not felt this good in 20 years," says Wells, who says she was sick for years without a diagnosis.

Wells, who is deaf, now draws, gardens, kayaks, travels in her recreational vehicle and spends lots of time being a grandmother. If her symptoms return, however, she'll go back on antibiotics.

Pockette is also off antibiotics.

"I'm getting better. I'm not 100 percent by far. I'm always tired still. I can't do what I used to do." But, he says, "I can think again. I can retain information again."

Sagerman will take antibiotics – she now takes three – until after her symptoms stop.

"The one symptom that I can't seem to get rid of is this mild headache. It's this burning feeling behind my forehead," she says.

She's also weak, must leave housework to her understanding boyfriend, suffers some "brain fog," sometimes has trouble finding a word she's trying to say and is reduced to part-time hours as a historic preservation consultant.

"I'd say it's affected every aspect of my life. I can't work as much, I can't exercise, I can't go out at night because I'm too tired," she says.

"I have good days and I have bad days," Rose says. "Sometimes the good days stretch out."

Contact Robin Palmer at robin.palmer@timesargus.com or 479-0191, ext. 1171.

2 bills on Lyme disease spark division

By Elizabeth Lynch
Poughkeepsie Journal - Poughkeepsie, NY

Two Lyme-related bills pending in Congress are sparking divergent responses from local and regional groups.

U.S. Rep. Sue Kelly, R-Katonah, and U.S. Rep. Christopher Smith, a Republican from Hamilton, N.J., each introduced bills.

The bills are similar, but Smith's bill includes more specific goals.

Both bills call for developing tests to diagnose Lyme and would create a committee to advise the secretary of Health and Human Services. Smith's bill calls for $100 million over five years, while Kelly's calls for $50 million.

Both bills have been referred to committees.

"In 18 years, I haven't seen this much excitement from Lyme groups everywhere," said Pat Smith, president of the Lyme Disease Association, a national organizations based in New Jersey. The group supports Smith's bill.

Local Lyme advocates say the Kelly bill is not as comprehensive as the Smith bill.

Lyme is a tick-borne disease spread when an infected tick bites an individual.

More than 23,000 cases were reported nationally in 2002, though the disease is greatly under-reported, according to the Centers for Disease Control and Prevention.

Symptoms include a bull's-eye rash, fever, malaise, fatigue, head-ache, muscle and joint aches. Lyme can be treated with antibiotics, but isn't always easy to diagnose.

The Lyme Disease Foundation in Connecticut supports Kelly's bill, while the Hudson Valley Lyme Disease Association supports Smith's bill.

"This is really what [Kelly's] constituents want," Jill Auerbach, chairwoman of the Hudson Valley Lyme Disease Association, said of her group's support of the Smith bill. "Only one bill is going to get through Congress, if any at all. We want a bill that will do something. [Smith's] bill will do something."

Kelly bill given better chances

But Tom Forschner, executive director of the Lyme Disease Foundation, said Kelly's bill has a better chance of passing both houses of Congress.

"We know we're not going to get $100 million for Lyme. It's ridiculous," Forschner said, referring to the amount Smith's bill calls for. He said Smith's bill also directs some of the money to organizations that are not under government oversight.

Auerbach said she has asked members of Kelly's staff to urge the congresswoman to withdraw her bill and support Smith's proposal.

That's unlikely to happen said Kevin Callahan, Kelly's spokesman.

"Any bill that can get through to support Lyme is positive," Callahan said. He said Kelly is planning to co-sponsor Smith's bill and she hopes Smith will back her proposal.

Both bills call for an advisory panel, but Smith's bill calls for the panel to include a "diversity of scientific perspectives" to ensure the membership includes doctors who believe Lyme, especially chronic Lyme, is a difficult disease to diagnose and treat, supporters said.

Smith's bill "provides more potential for patient-care benefits," said Barbara Buchman, executive director of the International Lyme and Associated Diseases Society in Maryland.

Saturday, June 25, 2005

You're so sore and your bones hurt

Washington Examiner
Betty Hutcheson doesn't remember the tick bite that most likely developed into Lyme disease. The tiny insect probably nibbled at her skin as she was tending to her 25-acre farm in Rappahannock County.

But after exhaustion and "terrible" headaches began to debilitate Hutcheson a few years ago, she saw a doctor in Pittsburgh who diagnosed her with Lyme disease.

"Sometimes you really don't feel like moving," said Hutcheson, 70. "Because you're so sore and your bones hurt, you just can't do whatever it is you used to do anymore."

Lyme disease is a bacterial infection transmitted to humans by deer ticks. Left untreated, Lyme disease can cause arthritic symptoms and can lead to more serious conditions that affect the brain, said Lucy Caldwell, Virginia Department of Health spokeswoman.

Hutcheson said she was fortunate to have managed the disease well, but her daughter developed viral meningitis and lost her hearing after developing Lyme disease about five years ago. Last year Hutcheson's 9-year-old granddaughter developed the disease after a tick bit her on the stomach, leaving a "bull's-eye rash," the trademark symptom of Lyme disease. However, often the rash doesn't appear, making it harder to diagnose Lyme disease.

"It's something I really don't wish on my worst enemy," Hutcheson said.

To date, 38 cases of Lyme disease have been reported in Virginia, Caldwell said. Of those, 31 are in Northern Virginia, with most being in Loudoun County. This time last year, there had been 13 cases reported in the entire state, Caldwell said.

Loudoun's booming population, "strong rural component" and increased awareness all factor into the county's disproportionate rate, said David Goodfriend, director of the Loudoun County Health Department.

"More and more people are coming into contact with the ticks," he said. "As we've tried to educate the community, more and more people are going to the doctor if they see a rash or have a summer cold."

Last year 111 of Maryland's 891 cases of Lyme disease came from Montgomery and Prince George's counties, said John Hammond, spokesman for the Maryland Department of Health and Mental Hygiene.

"It's unclear how many confirmed cases we have against reported cases," Hammond said, referring to 2005 statistics.

The District has confirmed three cases of Lyme disease this year, said Phillippa Mezile, communications officer at the D.C. Department of Health.

Lyme disease is common to certain areas of the country, including states along the mid-Atlantic coastline, Caldwell said, and is seasonal, peaking from May through October.




The best cure for Lyme disease is prevention

Virginia Department of Health spokeswoman Lucy Caldwell offers these hints for warding off ticks and disease:

Pay attention to what you wear.

"If you're going to be entering an area infested with ticks, like tall grass or a densely wooded area, wear long-sleeved shirts, tuck pants into socks or wear high rubber boots," Caldwell said. Loose, light-colored clothing also makes spotting ticks easier.

Check your body.

"Ticks crawl on areas of your body and you never even notice," Caldwell said. Some favorite tick hangouts are underarms, the back and behind the neck near the scalp, she said. Caldwell suggests tying long hair back before going outside.

Clean up.

Reduce the number of ticks around the house by getting rid of leaves and woodpiles, Caldwell said.

If you do spot a tick on your skin, be careful how you remove it.

"There are a lot of old wives' tales about how to remove a tick," Caldwell said. "Using nail polish, petroleum jelly, alcohol or hot matches are not safe ways to remove a tick."

The easiest way to remove a tick, Caldwell said, is by grasping the tick with a pair of fine-point tweezers as close to the skin as possible and pulling the tick away from the body.

Thursday, June 23, 2005

Tick(ing) time bomb

UM Lyme expert studies ecology of the disease near his Ogema vacation home
Ogema, MN

A University of Minnesota microbiologist who has a vacation home near Ogema has come to some interesting conclusions about the local ecology of Lyme disease. His story might persuade Price County residents to think somewhat differently about two common visitors to Northwoods campsites and backyards.

Professor Russell Johnson's work has centered on the Twin Cities and Camp Ripley areas, where white-footed mice are the primary reservoir for the disease.

In a comparative study, Johnson live-trapped 39 animals near his Ogema home - including mice, squirrels, chipmunks and voles - and transported them to the university lab for analysis. The findings raised his eyebrows.

"I found the results to be very interesting and different from the data we have generated in Minnesota," he wrote in an e-mail to THE-BEE last month. Specifically, he found that red squirrels and chipmunks are major carriers for the disease on the Ogema property (Johnson is originally from Wausau and received his doctorate from the University of Wisconsin-Madison, and the Ogema home has been in his family for decades).

Moreover, several of the chipmunk and red squirrel specimens carried another lesser-known emergent disease known as human anaplasmosis, which, like Lyme disease, is caused by a bacteria and is transmitted by the deer tick.

Human anaplasmosis is marked by fever, aches and pains, and is less common than Lyme disease, but both are on the rise in Wisconsin.

Johnson, who has studied Lyme disease for 20 years and has appeared on Twin Cities television to talk about it, first decided to test the Ogema area to see how different habitat influences Lyme's pathways. He said the highly variable habitats of glacial moraines - which are prevalent in southern Price County - harbor different small-mammal species than the Twin Cities area.

He lured the critters on his 40-acre spread with peanut butter, oats and apples.

Chipmunks had the highest percentage of positive Lyme disease tests. Of nine chipmunks caught on his property, Johnson's team found that seven were infected with Lyme disease.

"That distribution is unusual and very high," he said.

Johnson admitted that his sample size is smaller than he would like, but he said the numbers were strong enough to suggest that Lyme disease in Price County and similar habitats follows a different path than has been documented elsewhere in the upper Midwest. One reason is simply that chipmunks and red squirrels are more plentiful here, he said.

The history of the disease

Nobody knows where Lyme disease lurked before cases started to become widespread in the 1970s and 1980s. One of the first cases was discovered in Lyme, Connecticut, which is how the disease was named.

Johnson said the two essential elements for deer ticks - forest cover and deer - were not as prevalent around the turn of the century and into the 1930s, when crosscut saws and unregulated hunting ruled the upper Midwest. But as deer populations grew and forest lands regenerated, deer tick habitat improved. As more and more humans came to the North seeking farmland or recreation, the potential for tick-borne diseases increased dramatically. Lyme disease cases have increased nearly every year since it was first discovered.

Tick life cycle

Deer tick larvae hatch disease-free, Johnson said. They then seek a blood meal from any animal that they can latch on to, which are often small mammals. If the mammal harbors Lyme disease, the tick is likely to pick it up. Then, during the nymph stage, the tick seeks another meal. If the host happens to be a human, transmission may occur.

Adult deer ticks prefer - you guessed it - deer.

"Deer blood is very nutritious," Johnson said, adding that deer do not harbor the disease. He said deer are also the "romantic site" for deer ticks at the end of their short life cycle, meaning the mating site.

Prevention and treatment

It takes approximately 36 hours for a tick to transmit Lyme disease, so tick checks are essential for people who spend time in the woods. Johnson said tick checks "are the most important preventive measure." He also recommends other common-sense steps, like bug-repellent application, tucking pant legs into boots and staying on cleared trails whenever possible.

An infected person will typically have a red bull's-eye around the bite area, but that's not always the case. The symptoms range from stiffness and swelling of joints to rashes, fever, lethargy, incoherence and loss of appetite. Anyone who suspects he or she might have Lyme disease should contact a physician right away.

Johnson said Lyme disease treatments for humans have come a long way since the disease was discovered. Although there is no human vaccine available, the disease can be effectively controlled and cured with antibiotics - especially if it's caught early enough.

"The earlier the better," Johnson said. "It's very few people who don't respond to treatment."

A human vaccine was on the market briefly but was pulled after authorities concluded the protection levels were insufficient in relation to the costs.

"It became too much of a headache," Johnson said.

One man's case

Ironically, Johnson's neighbor in Ogema fell ill with Lyme disease last summer. Ed Rhody didn't discover he had the disease until a rash had covered his body and he was sacked with aches and pains. He never saw a bull's-eye.

"He thought he had a bad flu," said Ed's wife Anne from their home last week. "Fortunately, his wife is a physician's assistant. (I) knew what to look for."

Even though his case was advanced, Rhody was cured with two courses of antibiotics over six weeks.

In light of his neighbor's case and his findings in the field, Johnson urged people to be aware of the risks.

"It's definitely around the area," he said. "The ticks in this area are active."

Lyme tick discovered in DuPage

Daily Herald - Chicago, IL
Up until now, DuPage County’s been able to blame Lyme disease cases on outside causes. But laboratory results show the first home-grown instance of a deer tick carrying the bacteria that causes Lyme disease, the county health department said Wednesday.

Gilchrest pushes Lyme disease measure

Daily Times - Salisbury, Maryland
Maryland Congressman Wayne Gilchrest is pushing for new legislation that would help the Eastern Shore -- along with the rest of the nation -- deal with the growing problem of Lyme disease.

The proposed legislation would form a national advisory committee to the U.S. Department of Health and Human Services and allocate nearly $100 million in federal funds over five years to establish accurate testing and treatment of Lyme disease. The bill was introduced by Gilchrest, R-1st-Md., and New Jersey Congressman Chris Smith last week.

Combating the disease -- which causes arthritic, neurological and cardiovascular problems in 20,000 Americans each year -- holds personal meaning for Gilchrest.

Gilchrest said he has seen the effects of the disease firsthand, from members of his own staff to his wife, Barbara, who fought the illness for a period of time.

"I have seen the devastating effects this disease has had on families in my district and the growing costs it has on our economy and communities," he said.

While 49 states have reported at least one case of the disease, which is spread through deer ticks, Gilchrest said policies for nationwide prevention have only been recently developed as doctors try to unify their findings.

Though still in its early stages, Gilchrest said the bill appears to be drawing support from other lawmakers.

"This bill is an ambitious but necessary attempt to finally understand and treat this growing epidemic," he said. "Now its up to some of us to work hard and educate members of the House and Senate."

But while Gilchrest lobbies in Washington, the bill has already drawn kudos from some residents on the Lower Shore.

Pam Andrews, co-founder and vice president of the Eastern Shore Lyme Disease Association, said the need to tell people about the illness is paramount to prevention.

"It's a very important bill," said Andrews, who suffers from the disease herself. "If we don't get it under control, its going to ruin people's lives."

Jackie King, a Delmar resident and fellow ESLDA member, said they continue to make their own efforts to inform the community. Pat Smith, president of the Lyme Disease Association, will speak in Salisbury on Monday.

"(The bill) is long overdue," she said. "It would cure a lot of problems we have as far as research and prevention awareness."

Wednesday, June 22, 2005

The Medical Minute: Lyme disease upswing expected

Penn State Live - PA,USA
It's Lyme disease season again, particularly in the northeast United States. Last year in Pennsylvania there were 903 reported cases of Lyme disease and reports are on course to exceed that number this year according to the Centers for Disease Control. To understand how many cases that represents, compare it to 642 reported cases of AIDS and 124 cases of tuberculosis.

Most people know ticks transmit Lyme disease, but there are other tick-borne illnesses including Rocky Mountain Spotted Fever (12 cases in Pennsylvania in 2004), ehrlichosis and more. Lyme disease is named for the town of Lyme, Conn., where a cluster of cases in the 1970s was linked to tick bites. It is believed Lyme disease was introduced into the United States by a herd of deer brought from Europe in the early 20th century.

Lyme disease is only carried by the Ixodes or deer tick. When tick eggs hatch, the newborn tick is called a larva. It looks like a tick but is only the size of a period on this screen. The larva stays on the ground until it can attach to a passing bird or mammal, typically a mouse, from which it feeds. Larvae are not born infected with Lyme, but may contract it from this feeding if the animal is infected. Since ticks do not pass on Lyme until they feed and because larvae do not feed again, they are not a threat to us.

Tick larvae live and grow in the ground until the following spring when the temperature rises above 40 degrees. About 25 percent of nymphs carry Lyme organisms. During peak times from May to July, nymph ticks climb onto grasses then attach to a passing animal, such as, a deer, bird, dog or human which brushes against it. Ticks do not jump or fly to hosts. The nymph, about the size of a sesame seed, will look for a place on its host to attach and feed. The tick attaches itself with an adhesive secretion and takes up to three days to feed. Disease can only be passed during feeding. Nymphs are often unnoticed until after feeding when they are swollen with blood. If not removed, they fall to the ground and grow into adults.

Adult ticks climb tall grasses and shrubs to continue to look for other hosts on which to feed until winter. They resume the following spring when they mate and die. About 50 percent of adult deer ticks carry Lyme which they contract from one of their feeding sources, but they are not usually responsible for transmitting it to humans since they are large enough for us to see and feel on our skin.

The risk of tick bites can be reduced by understanding where they are most active. Dense, mature woods with thick underbrush and small trees are the most likely place to find them. Well-mowed lawns discourage ticks because lack of vegetation makes it too hot and dry. Birdbaths, woodpiles, brush piles, stone fences, tree houses and swing sets and woods surrounding a yard are high-risk places for ticks. In addition, pets coming indoors from these areas may carry ticks into the house.

When one is in a high-risk area, light-colored clothing makes the dark ticks easier to see. Tuck long pants legs into socks and use a tick repellant containing DEET or permethrin to reduce the chance of picking up a tick. A veterinarian can help with an appropriate tick treatment for pets.

After exposure to potentially tick infested areas, remove all clothing and closely inspect the entire body for ticks. Crawling ticks are no threat and can be removed easily. If the tick is attached, grasp it with fine tweezers and gently pull. The adhesive will look like skin as it pulls away, but it might take a few seconds for the tick to release its bite. Do not try to burn the tick or apply Vaseline or other chemicals, simply pull it off slowly. Wash the area with soap and water. If the tick if flat, it did not feed and did not spread Lyme disease. If it is swollen, it may have transmitted disease. Seek medical care within a day or two and if possible, take the tick along in a secure container or plastic bag.

Too often, symptoms begin without noticing a tick bite. Most of the time a red ring develops within weeks of the bite, but it may be in an area that is not easily seen. If untreated, in the next few weeks, a flu-like illness without sore throat or respiratory symptoms develops, but since the flu does not occur in the warm weather, medical evaluation should be obtained. Most cases of Lyme disease are easily treated with antibiotics.

Untreated, Lyme disease can cause damage to the nervous system, heart and joints. There is a blood test for exposure to Lyme, but it takes a few weeks after infection to become positive and is best used to confirm suspected cases.

This summer, remember to take precautions to reduce the risk of Lyme disease in your family. For more information on Lyme disease, go to http://www.hmc.psu.edu/healthinfo/jkl/lymedisease.htm online.

Dutchess County to provide Tick Smart education

MidHudsonNews - Middletown, NY
Dutchess County has been awarded a $20,000 Tick Smart Grant dedicated to Lyme disease education and prevention. The one-time allocation will be used to further enhance prevention and education efforts, with special emphasis given to physician, providers, and elementary school children.

Lyme disease is a tick-borne illness and incidence in Dutchess County has grown from three confirmed cases in 1986 to more than 15,000 cases in 2004.

“Our Dutchess County Department of Health has been working diligently to address this emerging health issue by offering education, prevention, and surveillance activities,” said County Executive William Steinhaus. “These funds will allow us to continue prevention efforts.”

The funding will also allow the county to distribute 700 copies of the newly created "Tick-Borne Diseases in the Hudson Valley: A physician's reference manual" to area physicians and providers. This full-color desktop reference guide provides photos and information on tick identification, tick-borne diseases, and resources including reporting information.

The Tick Smart program which was developed by Dutchess County Department of Health is designed for third grade elementary students in the Arlington School District. This program utilizes a variety of methods to assist this age group in recognition of ticks, how to do tick checks, and what they can do to stay tick free. Tick-Check Harry, an English Sheep dog stuffed animal is one of the tools teachers will use with students to help them to perform tick checks and identify ticks. Teachers and school nurses who participate in the program will receive a training and curriculum package including tick removal kits.

Dutchess County applied for the Tick Smart Grant through the State Department of Health. The Dutchess County Department of Health also maintains a Lyme Disease Hotline at 845-486-3407.

Monday, June 20, 2005

Two Lyme Bills to Congress?!?

Currently, there are two different bills on their way to Congress:

Smith bill HR 2877 (ALERT)
  • sponsored by Rep. Christopher Smith (NJ)
  • providing $100 million
  • uses urgent tone concerning Lyme Disease in the US and reports that 200,000 to 240,000 new cases occur each year

Kelly bill HR 2526
  • sponsored by Rep. Sue Kelly (NY)
  • providing $50 million
  • wording of bill concentrates on "endemic" areas of the US and reports that 90 percent of Lyme cases take place in 10 states

There is a great deal more information in each bill and they are both here on LymeSpot for everyone to study. Both aim at providing better research and education for LYME DISEASE and OTHER TICK-BORNE DISORDERS. The real concern is which one will get the Lyme Community the urgent funding that it needs - that we need.

Information for both of these bills can be found on LymeSpot. Many people and organizations are split over which bill should be supported; LymeSpot will try to keep you up-to-date on happenings with both. You will find contact info for each bill as well as form letters to send your congressman here on LymeSpot.

Davy

Sample Letter in support of HR 2877

Below, please find a sample letter to send to your congressperson when asking them to support HR 2877.
-Phone calls are preferable; then fax.
-When calling a legislator, ask them to please support HR 2877, the Lyme bill sponsored by NY congressman Chris Smith.
-If they are a congressperson, ask them to co-sponsor
-If you call a senator, ask them to support a companion bill with similar language in the Senate

Go to http://www.visi.com/juan/congress/ for your congressmen.

The following sample letter was provided by CALDA, http://calda.intranets.com/

****

Dear Congressman:

I hope you will consider signing on as a cosponsor to HR 2877 (Smith), the ALERT Act for Lyme Education and Research and Other Tick-Borne Diseases. The Smith bill focuses on research but also contains an effective advisory committee that will have input into the expenditure of the monies and provide the Lyme community a strong public voice and balanced scientific viewpoint in regard to tick-borne diseases in Washington, DC. The committee will include a selection of doctors and scientists who support chronic Lyme disease and also patients and representatives from patient advocacy groups. The new bill will:

-Increase the amount of Lyme research funding available by $100 million over 5 years.

-Ensure mandatory research goals, better surveillance and improved prevention programs.

-Ensure that the committee is balanced & represents diversity of scientific viewpoints on issues.

-Provide for outcomes research, including treatment studies.

-Provide for National Academies of Science, Institute of Medicine, to study chronic Lyme disease including: assessment of empirical evidence of treating physicians and published peer-review, and assessment of treatment guidelines, e.g., Infectious Diseases Society of America and International Lyme & Associated Diseases Society, and their acceptance and utilization.

The International Lyme & Associated Diseases Society (ILADS), a professional medical society whose members are knowledgeable in treating Lyme disease and are published in the field, support the bill.

The national non-profit Lyme Disease Association and 73 Lyme disease organizations nationwide are supporting the bill. Nationally acclaimed authors including Amy Tan also support the bill. See www.LymeDiseaseAssociation.org for details.

Many of my friends and family have Lyme disease and it is a huge problem in our state of ____________. We ask for your support now. Please contact Cong. Smith's office at 202 225 3765 with questions or to sign on. I ask that you do this today.

Thank you for your time.

Saturday, June 18, 2005

Sample Letter in support of HR 2526

Contact your Representative today and ask them to cosponsor HR 2526! HR 2526 was reintroduced by Congresswoman Sue Kelly, Chair of the Congressional Lyme Disease Caucus, after passing the Senate by unanimous consent in a previous session. HR 2526 is comprehensive Lyme disease education, prevention, and research legislation. We need every Lyme disease patient and person at risk in an endemic area to help pass this important bill. Please help by contacting your Representative and asking them to become a cosponsor. There is a sample letter below which you can simply cut, paste, then fill in the blanks and send as an email, fax, or letter. Use the links below to find the contact information for your Representative. Sending a letters to your Representative using the sample letter should not take you more than a few minutes. If you have more time, personalize the letter or write your own. Personalized letters are generally the most effective.

Thank you,
The Lyme Disease Society
Member, Lyme Disease Community Caucus


Use the below links to contact your Representative:
_www.house.gov/writerep_ (http://www.house.gov/writerep)
_www.congress.org_ (http://www.congress.org)
Sample Letter in support of HR 2526:

----

Dear (Congressman or Congresswoman) (Last Name),

I would like to ask for your support as a cosponsor of HR 2526. HR 2526 is comprehensive Lyme disease education, prevention and research legislation which previously passed the Senate by unanimous consent (S. 969- 107th Congress). The Lyme disease patient community and individuals at risk in endemic areas need your support as a cosponsor. Passage of HR 2526 is critical to the fight against Lyme disease and stopping the rampant spread of tick-borne illnesses.

HR 2526 establishes a Tick-Borne Disorders Advisory Committee in the Office
of Secretary at the Department of Health and Human Services. The Advisory
Committee brings together patient representatives, non-profit organizations, health care providers, scientific community members, and public health officials to coordinate federal tick-borne disease programs. The bill provides $50,000,000 in funding over five years for federal Lyme disease education, prevention and research. This important funding will mobilize efforts to better prevent, diagnose and treat Lyme disease.

I hope you will become a cosponsor of HR 2526. You can contact Richard Olson in Rep. Sue Kelly's office (225-5441) to sign on as a cosponsor of the bill.

Sincerely,
(your name)
(your full address)
(if sending email, include your email address)

International Lyme & Associated Diseases Society (ILADS) Supports ALERT HR 2877 Smith Bill

The International Lyme and Associated Diseases Society (ILADS), a professional medical society whose membership includes hundreds of Lyme literate doctors, strongly supports HR 2877 entitled, Act for Lyme Education and Research and Tick-Borne Diseases, (ALERT), sponsored by Congressman Christopher Smith (NJ). ILADS considers this legislation, providing $100 million for research and education, an important step forward in the fight against tick-borne diseases. Doctors need the support of Congress to ensure that the full spectrum of medical and scientific knowledge about Lyme disease is considered by the government. We are currently striving to improve tests for Lyme, to educate physicians on proper diagnosis and treatment, and to examine the feasibility of implementing additional reporting methods to accurately gauge disease outbreaks and incidences. The bill also contains a provision for the Institute of Medicine, National Academy of Science, to conduct a study of chronic Lyme disease that will include an assessment of empirical evidence from treating physicians as well as published peer-review data, including guideline such as ILADS has published in peer-review.

Support this bill by calling your congressman today and asking him/her to co-sponsor this crucial piece of legislation. Go to http://www.visi.com/juan/congress/ for your congressmen.

Do not confuse this Smith bill HR 2877 with Kelly bill HR 2526. ILADS believes the Smith bill addresses what we need to accomplish more thoroughly than the provisions in HR 2526 if we realistically hope to see significant, tangible gains in research and in the diagnosis, treatment, and prevention of Lyme disease.

View bill text here.

Barbara Buchman, Executive Director , ILADS

Excerpt taken from: www.LymeDiseaseAssociation.org

HR 2877 - ALERT Act (Introduced in House)

109th CONGRESS

1st Session

H . R . 2877

To provide for the expansion and intensification of efforts for prevention, education, and research activities with respect to Lyme and other tick-borne diseases, including the establishment of a Tick-Borne Diseases Advisory Committee.

IN THE HOUSE OF REPRESENTATIVES

June 14, 2005


Mr. SMITH of New Jersey (for himself, Mr. GILCHREST, and Mr. PLATTS) introduced the following bill; which was referred to the Committee on Energy and Commerce

A BILL

To provide for the expansion and intensification of efforts for prevention, education, and research activities with respect to Lyme and other tick-borne diseases, including the establishment of a Tick-Borne Diseases Advisory Committee.

Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

This Act may be cited as the `Act for Lyme Education and Research and Tick-Borne Diseases' or the `ALERT Act'.

SEC. 2. FINDINGS.

The Congress finds as follows:

(1) The United States alone has 82 species of ticks causing at least 10 major diseases, which are Lyme disease, anaplasmosis, human monocytic ehrlichosis, babesiosis, tick paralysis, relapsing fever, tularemia, Rocky Mountain spotted fever, Colorado tick fever, and southern tick-associated rash illness (STARI) (also known as Masters' disease). New tick species continue to be classified, and new diseases continue to emerge.

(2) Lyme disease is the most prevalent vector-borne disease in the United States today.

(3) According to the Centers for Disease Control and Prevention, only 10 percent of cases that meet its surveillance criteria are reported; thus, an estimated 200,000 to 240,000 new cases occur each year.

(4) Tests to detect serum antibodies for Lyme disease can yield a high number of false-positive and false-negative results. False-negative results may delay diagnosis and treatment, which may lead to chronic, more debilitating, persistent and costly disease.

(5) The diagnosis and treatment picture of Lyme disease and other tick-borne diseases can be complicated because more than one tick-borne disease can be acquired by the bite of the same tick.

(6) If it is not diagnosed and treated early, Lyme disease can lead to chronic illness and can affect every system in the body, including the central nervous system. Diagnosis is complicated because Lyme disease can mimic diseases such as meningitis, multiple sclerosis, brain tumor, Alzheimer's disease, Parkinson's disease, ALS, and psychiatric illness.

(7) According to a study by the National Institutes of Health, patients with persistent Lyme disease suffer physical disability equivalent to that of congestive heart failure, severe pain equivalent to post-operative pain, and profound fatigue similar to multiple sclerosis.

SEC. 3. GOALS.

(a) Five-Year Plan- The Secretary of Health and Human Services, acting as appropriate through the Director of the Agency for Healthcare Research and Quality, the Director of the Centers for Disease Control and Prevention, and the Director of the National Institutes of Health, shall establish a plan that, for the five fiscal years following the date of the enactment of this Act, provides for activities to be carried out during such fiscal years toward achieving the goals described in paragraphs (1) through (4) of subsection (b). The plan shall, as appropriate to such goals, provide for the coordination of programs and activities regarding Lyme disease and other tick-borne diseases that are conducted or supported by the Federal Government.

(b) Goals-

(1) FIRST GOAL: DIAGNOSTIC TEST- The first goal under subsection (a) shall be--

(A) to develop a sensitive and definitive test for the diagnosis of Lyme disease capable of distinguishing active infection from past infection;

(B) to improve efficient utilization of diagnostic testing currently available to account for the multiple clinical manifestations of both acute and chronic Lyme disease; and

(C) to provide for the rapid evaluation and adoption of emerging test methods.

(2) SECOND GOAL: SURVEILLANCE AND REPORTING OF LYME DISEASE AND OTHER TICK-BORNE DISEASES- The second goal under subsection (a) shall be--

(A) to accurately determine the prevalence of Lyme disease and other tick-borne diseases in the United States;

(B) to evaluate the feasibility of developing a reporting system for collecting data on physician-diagnosed cases that do not meet the surveillance criteria of the Centers for Disease Control and Prevention in order to more accurately gauge disease outbreaks and incidence; and

(C) to evaluate the feasibility of creating a national uniform reporting system to include mandatory reporting by laboratories in each State.

(3) THIRD GOAL: PREVENTION OF LYME DISEASE AND OTHER TICK-BORNE DISEASES AND COMPLICATIONS DUE TO DELAYED DIAGNOSIS AND TREATMENT- The third goal under subsection (a) shall be--

(A) for the Director of the Agency for Healthcare Research and Quality, in coordination with the Director of the Centers for Disease Control and Prevention and the Director of the National Institutes of Health, to provide and promote access to a comprehensive, up-to-date clearinghouse of peer-reviewed information on Lyme and other tick-borne diseases;

(B) to provide for public education by expanding the Community Based Education Programs of the Centers for Disease Control and Prevention to include expansion of information access points available to the public;

(C) to create a physician education program that includes the full spectrum of scientific research on Lyme and other tick-borne diseases; and

(D) for the Secretary to sponsor scientific conferences on Lyme and other tick-borne diseases, including reporting and consideration of the full spectrum of clinically-based knowledge, with the first of such conferences held within 24 months after the date of the enactment of this Act and with further conferences held as determined appropriate by the Secretary.

(4) FOURTH GOAL: CLINICAL OUTCOMES RESEARCH- The fourth goal under subsection (a) shall be--

(A) to establish epidemiological research goals to determine the long term course of illness for Lyme disease; and

(B) to establish treatment outcomes research goals to determine the effectiveness of different treatment modalities.

SEC. 4. STUDY BY INSTITUTE OF MEDICINE.

(a) In General- Not later than 90 days after the date of the enactment of this Act, the Secretary shall request the Institute of Medicine, National Academies of Sciences, to enter into an agreement with the Secretary for the conduct of a study of chronic Lyme disease. Such study shall include a systematic assessment of empirical evidence of treating physicians, as well as published peer-reviewed data, and shall include recommendations for addressing research gaps in diagnosis and treatment of chronic Lyme disease and an assessment of treatment guidelines, such as those of the Infectious Diseases Society of America and those of the International Lyme and Associated Diseases Society, and their utilization.

(b) Report- The Secretary shall ensure that, not later than one year after the Secretary enters into the agreement under subsection (a), a report providing the results of the study under such subsection is submitted to the Secretary and the Tick-Borne Diseases Advisory Committee under section 6.

SEC. 5. INCREASED FUNDING FOR RESEARCH AND EDUCATION.

(a) In General- For the purpose of providing for research and educational activities for Lyme and other tick-borne diseases, and for carrying out efforts to prevent Lyme and other tick-borne diseases, there is authorized to be appropriated $20,000,000 for each of the fiscal years 2006 through 2010. Such authorization is in addition to other authorizations of appropriations that are available for such purpose.

(b) Study- Of the amounts appropriated under subsection (a), the Secretary shall reserve not more than $500,000 for conducting the study under section 4.

SEC. 6. ESTABLISHMENT OF TICK-BORNE DISEASES ADVISORY COMMITTEE.

(a) Establishment- Not later than 180 days after the date of the enactment of this Act, the Secretary shall establish within the Office of the Secretary an advisory committee to be known as the Tick-Borne Diseases Advisory Committee (referred to in this section as the `Committee').

(b) Duties- The Committee shall advise the Secretary and the Assistant Secretary for Health regarding the manner in which such officials can--

(1) ensure interagency coordination and communication and minimize overlap regarding efforts to address tick-borne diseases;

(2) identify opportunities to coordinate efforts with other Federal agencies and private organizations addressing such diseases;

(3) ensure interagency coordination and communication with constituency groups;

(4) ensure that a broad spectrum of scientific viewpoints are represented in public health policy decisions and that information disseminated to the public and physicians is balanced; and

(5) advise relevant Federal agencies on priorities.

(c) Membership-

(1) APPOINTED MEMBERS-

(A) IN GENERAL- From among individuals who are not officers or employees of the Federal Government, the Secretary shall appoint to the Committee, as voting members, an equal number of individuals from each of the groups described in clauses (i) through (v), as follows:

(i) Scientific community members representing the broad spectrum of viewpoints held within the scientific community, such as members of the International Lyme and Associated Diseases Society.

(ii) Representatives of tick-borne disease voluntary organizations.

(iii) Health care providers who are full-time practicing physicians providing care for acute and chronic tick-borne diseases.

(iv) Patient representatives who are individuals who have been diagnosed with tick-borne diseases or who have had an immediate family member diagnosed with such a disease.

(v) Representatives of State and local health departments and national organizations that represent State and local health professionals.

(B) CERTAIN REQUIREMENT- In appointing members under subparagraph (A), the Secretary shall ensure that such members, as a group, represent a diversity of scientific perspectives relevant to the duties of the Committee.

(2) EX OFFICIO MEMBERS- The Secretary shall designate the Assistant Secretary for Health as a nonvoting, ex officio member of the Committee. In addition, the Secretary shall designate, as nonvoting members of the Committee, representatives from each of the following Federal agencies:

(A) The Agency for Healthcare Research and Quality.

(B) The National Institutes of Health.

(C) The Centers for Disease Control and Prevention.

(D) The Food and Drug Administration.

(E) The Office of the Assistant Secretary for Health.

(F) Such additional Federal agencies as the Secretary determines to be appropriate.

(3) CHAIR- The members of the Committee appointed under paragraph (1) shall select an individual from among such members to serve as the chair of the Committee. The term for serving as the chair shall be two years.

(4) TERM OF APPOINTMENT- The term of service for each member of the Committee, other than the Assistant Secretary for Health, shall be four years.

(5) VACANCY- A vacancy in the membership of the Committee shall be filled in the same manner as the original appointment. Any member appointed to fill a vacancy for an unexpired term shall be appointed for the remainder of that term. Members may serve after the expiration of their terms until their successors have taken office.

(d) Meetings- The Committee shall hold public meetings, except as otherwise determined by the Secretary, giving notice to the public of such, and meet at least twice a year with additional meetings subject to the call of the Chair. Agenda items may be added at the request of members of the Committee, including the Chairs. Meetings shall be conducted, and records of the proceedings shall be maintained, as required by applicable law and by regulations of the Secretary.

(e) Authorization of Appropriations- For the purpose of carrying out this section, there is authorized to be appropriated $250,000 for each of the fiscal years 2006 and 2007. Amounts appropriated under the preceding sentence shall be used for the expenses and per diem costs incurred by the Committee under this section in accordance with the Federal Advisory Committee Act, except that no voting member of the Committee shall be a permanent salaried employee.

SEC. 7. REPORTS.

(a) In General- Not later than 24 months after the date of the enactment of this Act, and annually thereafter, the Secretary shall submit to the Congress a report on the activities carried out under this Act.

(b) Content- Reports under subsection (a) shall describe--

(1) progress in the development of accurate diagnostic tools and treatment modalities and their use in clinical settings;

(2) the promotion of public awareness and physician education initiatives to improve the knowledge of health care providers and the public regarding clinical and surveillance practices for Lyme disease and other tick-borne diseases; and

(3) other significant activities relating to surveillance, diagnosis, treatment, or prevention of Lyme and other tick-borne diseases.

SEC. 8. DEFINITION.

For purposes of this Act, the `Secretary' means the Secretary of Health and Human Services.

Thursday, June 16, 2005

Summer Is Peak Time For Lyme Disease

DES MOINES, Iowa -- Dr. Tom Evans of Iowa Health System offers prevention tips and symptoms of Lyme disease, which is an infection carried by deer ticks.

Evans said that Lyme disease is a bacteria infection, and that two-thirds of people that get Lyme disease don't know that they have been bitten by deer ticks.

The disease is the most common ailment transmitted by an insect in the U.S.

Evans said there were 49 cases of Lyme disease in Iowa last year.

Evans said that the disease is present in certain areas of the country. On the East Coast, it occurs from Massachusetts to Virginia. One the West Coast, it occurs in northern California and Oregon. In the Midwest, it can be found in Wisconsin, Minnesota, and the eastern two-thirds of Iowa.

Evans said the symptoms of Lyme disease make it difficult to detect.

He said the first stage of the disease includes flu-like symptoms. He said in two-thirds of Lyme disease cases, people have a rash like a bullseye.

He said in the second stage, a person may experience cardiac and neurological symptoms.

He said that in the third stage, a person may experience arthritis and inflammation of the brain.

Evans said the treatment for Lyme disease is antibiotics. Patients take oral antibiotics in the early stages, and an IV in later stages.

He said people should avoid areas where there is tall grass and brush in which ticks may be located. He also suggests wearing protective clothing and insect repellant.

He recommends checking children after they have been playing outside.

Identifying Tick-borne Illnesses

Fairfax County health department participates in tick survey to protect communities.
By Brynn Grimley/June 16, 2005

McLean, Va -- Headaches, nausea, aching joints, high fevers, chills, rashes and fatigue.

In 2003 Nick Penning of Arlington, experienced some of these symptoms three days after finding a tick on his leg. For two years, he has experienced severe symptoms and deals with joint aches, nausea and fatigue on a regular basis.
"Almost every morning I woke up moaning," said Penning about the months after his tick bite. "The pain was unbelievable."

Although Penning showed symptoms during the summer of 2003, it wasn't until April 2004 that a doctor diagnosed him with Lyme Disease, a tick-borne illness, and offered him appropriate treatment.

Tuesday, June 14, 2005

News Flash! $100 Million Proposed for Lyme Disease

Acclaimed Authors Join the Lyme Disease Association, Affiliates & Friends All Support H.R 2877 “ALERT” Act

Authors Amy Tan, Jordan Fisher Smith, and E. Jean Carroll ask you to take action now. Congressman Christopher Smith (R-NJ) a longtime friend of the Lyme community who has successfully fought for funding, scheduled meetings for us with important officials in DC, and also written supportive letters for our doctors, has just introduced strong federal Lyme disease legislation (H.R.2877) entitled “Act for Lyme Education and Research and Tick-Borne Diseases” (ALERT). The Smith bill will go a long way in getting a much needed and higher level of resources dedicated to Lyme disease, as well as providing numerous measures to help ensure that resources are expended effectively to provide the most benefit to Lyme and other tick-borne disease patients. Smith was joined by Congressmen Wayne Gilchrest (MD) and Todd Platts (PA) (See http://thomas.loc.gov/ for text)

Authors & Lyme Advocates Ask For Your IMMEDIATE action to help this bill become law.

The Smith bill focuses on research but also contains an effective advisory committee that will have input into the expenditure of the monies and provide the Lyme community a strong public voice and balanced scientific viewpoint in regard to tick-borne diseases in Washington, DC. The committee will include a selection of doctors and scientists who support chronic Lyme disease and also patients and representatives from patient advocacy groups. The new bill will:

• Increase the amount of Lyme research funding available by $100 million over 5 years.
• Ensure mandatory research goals, better surveillance and improved prevention programs.
• Ensure that committee is balanced & represents diversity of scientific viewpoints on issues.
• Provide for outcomes research, including treatment studies.
• Provide for National Academies of Science, Institute of Medicine, to study chronic Lyme disease including: assessment of empirical evidence of treating physicians and published peer-review, and assessment of treatment guidelines, e.g., Infectious Diseases Society of America and International Lyme & Associated Diseases Society, and their acceptance and utilization.

On the other side of Capitol Hill, members of the Senate have expressed a similar desire to introduce and pass strong Lyme disease legislation. We are hopeful that the Senate will pass language that is identical, or nearly identical, to that in HR 2877. We are most appreciative of the work of Senators Santorum and Dodd in their efforts to work with the House and pass equally strong Lyme disease language so that a bill can finally move to the President’s desk for his signature.

Many of you have asked about HR 2526, the bill introduced by Representative Sue Kelly. While we were encouraged by the introduction of this bill and appreciate Representative Kelly’s efforts, we believe that we need to accomplish much more than the provisions in HR 2526 if we realistically hope to see significant, tangible gains in research and in the diagnosis, treatment, and prevention of Lyme disease. For example, the Kelly bill provides half as much funding for research, does not direct the government to commission an independent scientific study of chronic Lyme, and does not ensure that advisory committee members have experience treating chronic disease.

YOU MUST ACT NOW! DO NOT PUT THIS LETTER DOWN WITHOUT ACTING. DELAY CAN COST US THIS MUCH NEEDED BILL.

Please fax, email, or call your Senators and Representatives today. Tell your Representatives in the House that you strongly support HR 2877 and you’re counting on their support. Also tell your Senators that you want them to support a strong Senate bill, like HR 2877. Use the sample letter enclosed or write your own and include a paragraph about how Lyme affects your family. See your telephone directory or http://www.visi.com/juan/congress/ for names/addresses of congressmen. Please visit the LDA website at www.LymeDiseaseAssociation.org for current updates. See http://thomas.loc.gov/ for bill text.

Lyme disease group's future is under cloud

Director's death leaves big void
By Elizabeth Lynch
Poughkeepsie Journal
A longtime advocate in the fight to prevent the spread of ticks and Lyme disease has died, leaving the future of the organization he headed uncertain.

David Weld, 66, executive director the American Lyme Disease Foundation based in Somers, Westchester County, died last week. He had served as the head of the foundation since 1990 and was a founding member in 1987.

"My impression was he really was the foundation," said Rick Ostfeld, an ecologist at the Institute for Ecosystem Studies in Millbrook. Ostfeld worked with Weld for three years on a program to reduce Lyme disease in Dutchess County. Weld was "was the idea person, he was the fundraiser, he was the mover and shaker, he was the brains in the project," Ostfeld said.

The foundation's board of directors is committed to continuing the Web site and current programs at least through this season, foundation board member James Handelman said.

"We are committed to keeping the foundation going ... because the value of the information that it provides, as well as the Web site, are valid reasons for keeping that in existence," Handelman said. "I do not know if David Weld will be replaced. This was such a shock and so sudden."

Weld, a biologist, lived in Pound Ridge in Westchester. He died June 5 of cancer.

Weld will be missed in the fight against Lyme, said even those who disagreed with his beliefs.

Disease views vary

The foundation has held a conservative view about Lyme disease and maintained the disease was easily diagnosed, treated and cured. Other groups believe the disease is very difficult to diagnose and can produce some strange side-effects.

The differences made it difficult for some groups to work with Weld.

"Certainly we mourn his passing .... and we hope we can all work together and move forward," said Tom Forschner, executive director of the Connecticut-based Lyme Disease Foundation.

Weld, said Forschner, "was our local opposition. We did have a difference of opinion."

But Forschner called Weld "honorable" and said the two organizations' opposing viewpoints helped highlight how difficult it can be to diagnose and treat Lyme.

Jill Auerbach, chairwoman of the Hudson Valley Lyme Disease Association, said she often was at odds with Weld but they agreed on one thing — ticks are at the root of the problem and need to be controlled.

"I considered him a friend. We respected each other for our opinions, while we knew they were different," she said.

Dr. Gary Wormser, chief of infectious disease at Westchester Medical Center and New York Medical College, said Weld's conservative viewpoint will be missed.

He said Weld acted as a counter-balance to some of the misinformation being spread about Lyme.

"He represented a viewpoint that was extremely rational," Wormser said.

Treatment station developed

Pat Smith, president of the New Jersey-based Lyme Disease Association, pointed out Weld and the foundation focused on prevention and developed the 4-poster Deer Treatment Bait Station. The unit was designed to kill ticks that feed on deer and prevent them from being spread. The station cannot be used in New York.

She said she hoped Weld's successor will continue those efforts.

"Nobody else was really involved in prevention," Smith said.

Dr. Michael Caldwell, Dutchess County's health commissioner, said he worked with Weld on a Lyme prevention grant.

"He really was a strong and constant voice in the fight against Lyme disease," he said. "He was especially concerned with assuring we all could enjoy the outdoors" without the threat of Lyme disease.

Weld created a pocket-sized card to help people identify ticks, created traveling exhibits and other educational materials, Ostfeld said.

"He was ... very progressive about trying to target groups that were high risk but often neglected" such as landscapers and those with darker skin on who it may be difficult noticing a tick or the classic bulls-eye rash.

"I admired him and liked him personally," Ostfeld said.

Monday, June 13, 2005

Ticked off about Lyme disease

Marilyn Linton / London Free Press
London, Ontario Canada
2005-06-13 02:03:53

The story of Keith Poullos sounds like one of those medical mystery scripts you'd see on TV. Doctors work through medical mazes trying to identify whatever it is that, with minutes left in the show, is threatening to kill the patient.

In Poullos's case, the cause of his symptoms (fatigue, brain fog, body pain, numbness and stuttering, to name a few) was so elusive that it looked like he might have anything from multiple sclerosis to depression, from fibromyalgia to Alzheimer's.

Instead, the cause was a tiny deer tick and the final diagnosis was Lyme disease. Poullos, who lives just northwest of Toronto and works as a small engines mechanic, feels the disease has been upstaged by West Nile virus and that doctors forget it.

"My doctor knew nothing about it and didn't think it was a problem here," he told me. "They all think it's an American problem. The doctors are just not educated on this in this country." After no help at all from the medical community, Poullos was advised by a veterinarian to pressure his doctors to consider Lyme disease. He's now on antibiotics and feeling much better than a few months ago.

Lyme disease is the most often reported tick-borne illness in the U.S. The ugly little ticks, about the size of sesame seeds, attach to the skin. Infection is transferred if the ticks are also infected by a bacteria called Borrelia burgdorferi and remain on the skin feeding on your blood for 36 to 48 hours.

The classic tick bite sign is a bull's-eye type rash developing around the bite between three and 32 days later. Flu-like symptoms, fatigue, chills, fever, headache, a stiff neck and general malaise accompany the illness. But although a course of antibiotics can cure it, patients who've had it say that too few doctors diagnose it in the first place.

That may be because the test available to confirm the diagnosis (called an ELISA test) is unreliable, and a second more reliable test (called the Western blot) is used only if you test positive with ELISA, says British Columbia's Jim Wilson, a Lyme disease patient and president of the Canadian Lyme Disease Foundation (www.canlyme.com). He sazys the more sensitive Western blot should be used more often.

"A survey of 516 labs showed that they all failed to detect Lyme disease using the ELISA method," he says.

He also criticizes Canada for doing a dismal job of tracking the disease.

"In the U.S., they have a surveillance system and wherever they look they find it. The doctors also look for it. Here, doctors say, 'Don't be silly. Your symptoms aren't Lyme disease -- it's too rare.' That same patient goes across the border to a doctor and the doctor will diagnose Lyme. Here it's not even on the radar."

He says that while Canada's "medical machine continues to deny the true prevalence of this disease, more and more evidence is mounting that it may be a pandemic."

If indeed it is an enormous public health issue, we're sure to hear about it soon. But even if it isn't, more of us need to be aware of the long-term danger of the disease. Recent Finnish research indicates that nearly a third of people with Lyme disease show no immediate symptoms. Instead, the bacteria multiplies within the body -- hiding sneakily from the immune system -- and eventually wreaks havoc on the body's defences.

To prevent it, use insect repellents containing DEET and cover up with long pants and long-sleeved shirts. Even if ticks do find you, infection is unlikely to occur before 36 hours of tick attachment, so it's important to check for them daily, remove any you find with fine-tipped tweezers, then cleanse the area with an antiseptic.

Ticks prefer moist, shady places with low-lying vegetation, overgrown grass or leaf litter. They can't jump or fly, so you'll only get one on you if you happen to brush against it.

So don't get ticked: Skin cancer isn't the only reason to cover up this summer.

Tick search reveals disease risk

By John Hilliard / Boston Herald
Monday, June 13, 2005

WESTON -- A study of Lyme disease by two sophomores at Weston High School could help locals stay healthy this summer.

"We were discovering something new," said Sabrina Liu, 16.

The two teens -- Liu and partner Suzanne Reny, also 16 -- spent three days scouring areas around town, including Newton Street, Highland Street, College Pond, Cat Rock and Coburn Street, searching for ticks, hoping to learn how many carried the bacteria which can cause Lyme disease.

They hoped the project would not only serve science, but be a service to the community.

"It definitely raised people's awareness," said Liu. "Most people didn't know it was happening in Weston."

According to the Centers for Disease Control, about 23,000 cases of Lyme Disease occurred in the U.S. in 2002. However, experts believe the disease is greatly underreported.

Disease-carrying ticks are common in the Northeast and upper Midwest regions of the U.S., and the peak season for spreading the bacteria for Lyme disease is late spring through the summer. While the disease is rarely fatal, if left untreated, it can cause cognitive disorders, sleep problems, fatigue and personality changes.

In Weston, the teens caught about 50 deer ticks, which, unlike dog ticks, can carry Lyme disease. Since deer ticks are barely larger than the period at the end of this sentence, the high schoolers used a large bolt of fabric that was brushed along the ground to snare the ticks. Adding a bit of high-tech to a school science project, Liu used her father's lab to test whether the ticks carried the disease.

Dr. Leo Liu's company, Woburn-based Cambria Biosciences, specializes in testing drug compounds, but his background is in infectious diseases. He said he hopes this science project can raise people's awareness of the dangers of Lyme Disease.

"The general public should just be aware that it's not a new disease -- it's established here," he said.

Dr. Liu contacted a friend who specializes in tick biology to learn a relatively simple test that determines whether a tick carries Lyme disease-causing bacteria.

"Pretty much everything could be done in a high school biology lab," said Liu.

Of 36 ticks tested, 29 percent were carrying the Lyme disease-causing bacteria borrelia burgdorferi.

Thursday, June 09, 2005

Lyme Disease Survey

The National Capital Lyme Disease Association is conducting an online survey of Lyme disease information. This is a voluntary survey and you do not have to identify yourself unless you choose to do so. You will find the survey at:

NatCapLyme_Lyme_disease_Survey_-_Click_Here
<http://www.natcaplyme.org/phpsurveyor/index.php?sid=1>

You can also find the link at our website at www.NatCapLyme.org
<http://www.natcaplyme.org/>
Item 4 on the Legislative Initative page.

We hope you will decide to submit your survey questionaire and that you will pass this e-mail on to others with the request that they consider submitting their survey as well and passing it on. We hope to collect sufficient data to be helpful to the Lyme community.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
National Capital Lyme Disease Association
natcaplyme@natcaplyme.org
www.natcaplyme.org
Phone & fax: 703-821-8833
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Stronger every day

With an iron will and an unconventional new treatment, Charlie Smith is going toe-to-toe with ALS

08:17 PM CDT on Monday, May 2, 2005

By BRYAN WOOLLEY / The Dallas Morning News

MULLIN, Texas – Charlie Smith is thinking about what he might do with the rest of his life.

"I don't want to go back to trucking," he says. "I want to be home every night to see my babies."

There are ranches for troubled boys in the Central Texas hills where Charlie lives. Maybe he could work at one of those, he says, or some place like them. Maybe he could be some kind of counselor.

"I'd like to tell those kids my story and what I've been through," he says. "Maybe I could help somebody who's wanting to give up."

Talking about the future is a strange new thing for Charlie. He wasn't supposed to have one.

In December 2002, doctors at the University of Texas Southwestern Medical Center at Dallas told him he might have amyotrophic lateral sclerosis (ALS), often called Lou Gehrig's disease. It weakens the body's muscles and then paralyzes them. It kills its victim, sometimes slowly, sometimes quickly, but always. In June 2003, the doctors reported that the diagnosis "has been confirmed."

By last fall, Charlie Smith had the strength to attend a hometown football game against rival Zephyr with his wife, Rémy, and son Charlie Jr. Charlie, 28, is making a comeback from a motor neuron disease.

ALS usually strikes people who are 50 or older. Charlie was only 25. The Dallas doctors said that he was the youngest ALS victim they had ever diagnosed and that young ALS victims usually die faster than older ones. The doctors predicted three to six months for Charlie, maybe a year.

"To tell somebody they have only so long to live, that really knocks a person's spirits down," Charlie says now.

Charlie first told his story to The Dallas Morning News in January 2004. He and his friends talked about what he used to be: the star of Mullin High School's six-man football team, its homecoming king, its Christmas prince, 6-foot-4 and handsome, strong-bodied and strong-willed, the leader among the little town's young men.

He and his wife, Rémy, had a 2-year-old daughter, Kyra, and 9-month-old Charlie Jr. Before his illness, Charlie drove a tractor-trailer rig, hauling stone from Mullin to home builders and landscapers in Dallas, San Antonio and Houston. He was on the road nearly all the time.

His calamity began one spring day in 2002 when he stepped out of his rig, lost his balance and fell on his back. His truck driver friends laughed, but the fall was the first symptom of his illness. It signaled the horrible change that was about to happen to Charlie.

At the time of the 2004 interview, Charlie had outlived the doctors' expectations, but he was sinking. His muscles were shrinking. His speech was slow and slurred. His fingers were stiff and curled. He had trouble breathing and swallowing.

Rémy dreaded driving the 30 miles to Comanche to buy groceries. She feared what she might face when she got home. "I was scared to death that I was going to be the one to ... you know ..."

To find Charlie dead.

Rémy thought of calling a hospice to help him through. Charlie was angry and defiant and stubborn, and sometimes depressed. He vowed that, despite the impossible odds and the doctors' expectations, he would recover.

Many Morning News readers were moved by Charlie's courage. Their interest led to the establishment of a medical fund for him, administered through a church in nearby Comanche. They contributed $16,000.

A reader phoned the Smiths and told them of Dr. William T. Harvey in Houston, who was treating her husband and other patients for symptoms like Charlie's and seemed to be having some success.

Charlie and Rémy made an appointment and drove to Houston, three hours from Mullin, to meet the doctor.

Charlie says, "It was like a big weight was lifted off of us when Dr. Harvey said, 'Well, we can help you.' Before that, we had no chance. Before that, we were running down a one-way track."

The doctor

Dr. Harvey is 67 years old, a graduate of the Air Force Academy and a retired NASA aerospace physician. During his 23-year career as an Air Force officer, he served as a biomedical engineer and a flight surgeon, and later in clinical aerospace medicine and in space medicine research at the U.S. Air Force School of Aerospace Medicine. After his retirement, he managed medical facilities for NASA and for a Department of Energy nuclear facility and for Lockheed.

His résumé says he's a clinician in general medicine, but all the nearly 900 patients he says he has treated in the past four or five years have had symptoms similar to Charlie's.

His board certifications are in aerospace medicine, not internal medicine or epidemiology. But in space medicine, he says, NASA physicians weren't able to depend on medical books, because the books they needed hadn't been written yet. Now he's working without books again, he says, because what he's doing is new.

His theory is outside the mainstream of standard diagnosis and treatment. Briefly and simplistically stated, it's this: Many patients who are diagnosed with ALS, multiple sclerosis, Parkinson's, chronic Lyme disease, fibromyalgia, chronic fatigue syndrome and other motor neuron diseases actually are victims of a bacteriological infection that can be cured or at least alleviated with massive doses of certain antibiotics.

The bacillus is Borrelia burgdorferi. Dr. Harvey says it's present in the blood of millions of people around the world, often from birth. It's relatively harmless, he says, until something triggers it to attack the nerves that activate the muscles.

Its presence in the blood can't be detected by the standard tests that most labs and hospitals use. According to Dr. Harvey, only two labs in the U.S. – one in Florida and one in California – are equipped to find and identify it.

He hasn't done clinical trials to test his theories, nor has he been published in peer-reviewed medical journals. Many doctors are skeptical that bacteria could be the cause of a motor neuron disease.

After the California lab discovered Borrelia burgdorferi in Charlie's blood, Dr. Harvey prescribed massive doses of antibiotics, some taken orally, some administered intravenously through a catheter in Charlie's chest.

Dr. Harvey has seen Charlie three times since his initial visit. He keeps in touch with the Smiths mostly by phone.

Charting progress

During the second office visit, last September, Dr. Harvey walked Charlie through all his symptoms, to determine whether any improvement had been made.

"I can get in and out of the bathtub," Charlie said. "I can take a shower by myself. My balance has come back. I can shampoo my hair without losing my balance."

Charlie's fingers were still curled, but he could straighten them a little more than before. He said he still had headaches. His ability to swallow had improved. "I eat steak every night," he said.

He had no pain in his legs, but some in his lower back. He no longer had difficulty breathing at night. He had regained the weight he had lost. His muscles, which had been shrinking, were coming back."

"Are you irritable?" Dr. Harvey asked.

"Sometimes I wake up in the morning and just want to get out of bed and run. And I get kind of angry."

"Are you depressed?"

"No."

"This is all good," Dr. Harvey said. "You're changing. I wish it were faster. It may be a longer journey than we thought it might be. We may be talking about a couple of years, or it could be that a sudden turn is just around the corner. We're getting somewhere with the disease. I think our course is the right one. You guys are fighters. I know you're going to gut it out."

Six months later, the slow improvement continues.

Charlie's chronic fatigue is gone. He can raise his arms above his head and lift his feet an inch or two off the floor. His shoulder muscles are filling out. He can rise from his wheelchair without help, and can stand erect, although sometimes a little wobbly. His speech is still slurred, but much clearer than it has been in years. His fingers are uncurling, slowly. He's beginning physical rehabilitation sessions in Comanche.

Still a struggle

While Charlie is improving, his illness has brought suffering to Rémy as well. She has lost weight. She's exhausted. Taking care of her husband and two rambunctious small children around the clock have worn her down.

Charlie has been unable to earn a paycheck for almost three years. The Social Security disability check on which his family lives can't stretch through the month. Bill collectors harass her.

"Rémy has been through a lot of responsibilities that a lot of people wouldn't take on," Charlie says. "She has held her head up through it all. I've learned to appreciate the little things. The one good thing that has come out of all this is the time I've been at home with my kids."

Rémy, 24, laughs. "He wouldn't have ever known that Little Charlie has to have strawberry milk and Kyra loves chocolate milk," she says.

Kyra is 3 now. Little Charlie is a strapping 19-month-old. "They keep my spirits up," Charlie says. "I ain't got time to feel bad. If none of this had happened, I'd probably still be driving that truck, and I wouldn't have near the bond I have with these kids now. This is something to be proud of."

So when Charlie goes to work again, he wants to come home at night. His voice fills with energy and a kind of joy when he talks about that future day.

"At one time," he says, "I thought I was gone, that I was going away. But I'm not going nowhere no time."

Rémy's voice trembles. "The other day, I looked at him and I could see Charlie again."

Dr. Harvey devised treatment plan to heal himself

06:26 PM CDT on Saturday, April 30, 2005

By BRYAN WOOLLEY / The Dallas Morning News

Dr. William T. Harvey says he once was a victim of the debilitating disease for which he has been treating Charlie Smith. Or something like it. It was in 1987 in California, he says, just before his 50th birthday, that his life "kind of fell through the roof."

"It was all pain, all brain fog," he says. "I couldn't think anymore. I had to quit my job. I went back to my house in San Antonio and figured that I had a fatal disease and nobody could figure out what it was."

He says he recovered after giving himself massive doses of antibiotics. Another doctor who, like Charlie, had been diagnosed with amyotrophic lateral sclerosis, says Dr. Harvey successfully treated him with the same method.

But Dr. Harvey's methods are outside the medical mainstream, and many experts are skeptical of his theories.

"One of the things that makes modern medicine such a powerful thing is that there is general consensus on issues and evidence," says Dr. Justin D. Radolf, a professor of medicine at the University of Connecticut and an authority on the bacterium Dr. Harvey is treating. "Dr. Harvey appears to be far beyond anything that's evidence-based. He's just basically making up his own rules."

Dr. Harvey blames a bacterium, Borellia burgdorferia, for the symptoms he experienced. He says patients like him may be diagnosed with a range of illnesses – chronic Lyme disease, Gulf War syndrome, fibromyalgia or Agent Orange syndrome. Some, he says, are diagnosed with ALS or multiple sclerosis or Parkinson's. Some are told that their problem isn't physical, that their pain is only in their minds.

Heal thyself

Dr. Harvey believed he had chronic fatigue syndrome, a vaguely defined malady that many doctors didn't believe was real. In 1999, he attended a medical conference on Lyme disease, which causes similar symptoms, although he says he was almost certain Lyme wasn't his problem.

At the conference, he learned of the use of oral antibiotics in treating Lyme disease and decided to treat himself with "high, high doses" of them to see whether they might help his condition, too.

"Little by little, I came out of the disease. Almost," he says. He began taking antibiotics in even larger doses through a catheter and says he achieved complete recovery.

His wife, Pat, had experienced similar symptoms and had been "sick as a dog," in bed for 12 years. She remains on antibiotics. "She's mostly well and highly functional," Dr. Harvey says.

In 2000, Dr. Pat Salvato, head of Diversified Medical Practices in Houston, invited Dr. Harvey to join her clinic, a chronic fatigue syndrome practice. Eventually, he says, he identified Borellia and another bacterium, Babesia, as agents of the illness.

Of the 900 patients that Dr. Harvey has treated over the past four years, he says, about 300 have finished therapy, and their symptoms haven't returned.

His star patient is another physician, David Martz, an oncologist-hematologist from Colorado Springs, Colo. Dr. Martz, now 64, was diagnosed with ALS in May 2003 and had to retire from his practice.

"I had been in the Colorado Springs medical community for 30 years," he says in a phone interview. "I was pretty well-known and respected in that community. Every expert in the community was involved in my care, trying to figure out what was going on. I was hospitalized for two weeks. At the end of that two weeks, they weren't sure what I had, but they thought I probably had early ALS."

A friend of Dr. Martz's son saw a newspaper article in Maryland about Dr. Harvey and his work. One of Dr. Martz's colleagues knew Dr. Harvey and put them in touch. In January, Dr. Martz was put on high-dosage intravenous antibiotic treatment.

His symptoms are remarkably similar to Charlie Smith's. But for reasons Dr. Harvey says he doesn't know, Dr. Martz's recovery has been quicker. After six months of intensive treatment, Dr. Martz says he was back to 75 percent to 80 percent of the person he once was.

Now, Dr. Harvey says, a year after Dr. Martz began the antibiotic therapy, a neurologist who specializes in the disease has declared him "symptom free" of ALS.

Skepticism

Dr. Radolf says he's skeptical of Dr. Harvey's theories linking the Lyme disease bacterium with other ailments. Dr. Radolf has done extensive research in Lyme disease and diseases caused by Borrelia burgdorferi and other bacteria.

"Lyme disease does have neurological syndromes," he says. "But regarding neurological diseases such as ALS and MS, I think very few people in the neurological community would accept that these are due to Lyme disease," or Borellia burgdorferi. I don't believe there is any evidence that real, properly diagnosed ALS is caused by Borellia or that it is treatable with antibiotics."

Dr. Harvey says his work has not been a scientific study. "I'm just treating patients," he says. "And I treat only one kind of disease – this bacterium, Borellia."

Sharing his knowledge

Dr. Harvey has moved to his Del Rio, Texas, vacation home, where he spends most of his time writing about Borellia burgdorferi and Babesia and organizing a database to be shared with other physicians. He closed his Houston office in September, and except for Charlie and a few others who were diagnosed with ALS, his patients were referred to other physicians. But the afflicted call, and the doctor is seeing new patients again. (He can be reached through his assistant, Glenda Castillo, at 830-774-4094.)

"I'm starting to understand it, finally," Dr. Harvey says. "So are a lot of other docs. I think this thing is just about to pop to the surface."

Wednesday, June 08, 2005

HR 2526 from New York

Tick-Borne Disorders Advisory Committee Act of 2005 (Introduced in House)

HR 2526 IH

109th CONGRESS

1st Session

H. R. 2526

To establish a Tick-Borne Disorders Advisory Committee, and for other purposes.

IN THE HOUSE OF REPRESENTATIVES

May 23, 2005

Mrs. KELLY (for herself, Mr. HINCHEY, Mr. KILDEE, Mr. MCNULTY, Mr. BRADLEY of New Hampshire, Mr. WOLF, Mr. PAYNE, Mr. ENGLISH of Pennsylvania, Mr. SWEENEY, Mr. GILCHREST, Mr. HASTINGS of Florida, and Mr. FRANK of Massachusetts) introduced the following bill; which was referred to the Committee on Energy and Commerce

A BILL

To establish a Tick-Borne Disorders Advisory Committee, and for other purposes.

Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

This Act may be cited as the `Tick-Borne Disorders Advisory Committee Act of 2005'.

SEC. 2. FINDINGS.

Congress makes the following findings:

(1) Lyme disease is a common but frequently misunderstood illness that, if not caught early and treated properly, can cause serious health problems.

(2) Lyme disease is a bacterial infection that is transmitted by a tick bite. Early signs of infection may include a rash and flu-like symptoms such as fever, muscle aches, headaches, and fatigue.

(3) Although Lyme disease can be treated with antibiotics if caught early, the disease often goes undetected because it mimics other illnesses or may be misdiagnosed. Untreated, Lyme disease can lead to severe heart, neurological, eye, and joint problems because the bacteria can affect many different organs and organ systems.

(4) Despite 17 years of Federal funding, there is still no test that can accurately determine infection and then prove bactericidal cure so that proper treatment is adequately achieved. Persistence of symptomatology in many patients without reliable testing makes treatment of patients more difficult.

(5) If an individual with Lyme disease does not receive treatment, such individual can develop severe heart, neurological, eye, and joint problems.

(6) Although Lyme disease accounts for 90 percent of all vector-borne infections in the United States, the ticks that spread Lyme disease also spread other disorders, such as ehrlichiosis, babesiosis, and other strains of Borrelia. All of these diseases in 1 patient makes diagnosis and treatment more difficult.

(7) Although tick-borne disease cases have been reported in 49 States and the District of Columbia, about 90 percent of the 20,000 cases have been reported in the following 10 States: Connecticut, Pennsylvania, New York, New Jersey, Rhode Island, Maryland, Massachusetts, Minnesota, Delaware, and Wisconsin. Studies have shown that the actual number of tick-borne disease cases are approximately 10 times the amount reported due to poor surveillance of the disease .

(8) Persistence of symptomatology in many patients without reliable testing makes treatment of patients more difficult.

(9) According to studies, Lyme disease costs the Nation between $1,000,000,000 to $2,000,000,000 each year in increased medical costs, lost productivity, prolonged pain and suffering, and costly delays in diagnosis and inappropriate treatment.

SEC. 3. ESTABLISHMENT OF A TICK-BORNE DISORDERS ADVISORY COMMITTEE.

(a) Establishment of Committee- Not later than 180 days after the date of enactment of this Act, there shall be established an advisory committee to be known as the Tick-Borne Disorders Advisory Committee organized in the Office of the Secretary.

(b) Duties- The Committee shall advise the Secretary of Health and Human Services and the Assistant Secretary for Health regarding how to--

(1) assure interagency coordination and communication and minimize overlap regarding efforts to address tick-borne disorders;

(2) identify opportunities to coordinate efforts with other Federal agencies and private organizations addressing tick-borne disorders; and

(3) develop informed responses to constituency groups regarding the Department of Health and Human Services' efforts and progress.

(c) Membership-

(1) APPOINTED MEMBERS-

(A) IN GENERAL- The Secretary shall appoint voting members to the Committee from among the following member groups:

(i) Scientific community members.

(ii) Representatives of tick-borne disorder voluntary organizations.

(iii) Health care providers.

(iv) Patient representatives who are individuals who have been diagnosed with tick-borne illnesses or who have had an immediate family member diagnosed with such illness.

(v) Representatives of State and local health departments and national organizations who represent State and local health professionals.

(B) REQUIREMENT- The Secretary shall ensure that an equal number of individuals are appointed to the Committee from each of the member groups described in clauses (i) through (v) of subparagraph (A).

(2) EX OFFICIO MEMBERS- The Committee shall have nonvoting ex officio members determined appropriate by the Secretary.

(d) Co-Chairpersons- The Assistant Secretary for Health shall serve as the co-chairperson of the Committee with a public co-chairperson chosen by the members described under subsection (c). The public co-chairperson shall serve a 2-year term and retain all voting rights.

(e) Term of Appointment- All members shall be appointed to serve on the Committee for 4 year terms.

(f) Vacancy- If there is a vacancy on the Committee, such position shall be filled in the same manner as the original appointment. Any member appointed to fill a vacancy for an unexpired term shall be appointed for the remainder of that term. Members may serve after the expiration of their terms until their successors have taken office.

(g) Meetings- The Committee shall hold public meetings, except as otherwise determined by the Secretary, giving notice to the public of such, and meet at least twice a year with additional meetings subject to the call of the co-chairpersons. Agenda items can be added at the request of the Committee members, as well as the co-chairpersons. Meetings shall be conducted, and records of the proceedings kept as required by applicable laws and departmental regulations.

(h) Reports-

(1) IN GENERAL- Not later than 24 months after the date of enactment of this Act, and annually thereafter, the Secretary shall submit to Congress a report on the activities carried out under this Act.

(2) CONTENT- Such reports shall describe--

(A) progress in the development of accurate diagnostic tools that are more useful in the clinical setting; and

(B) the promotion of public awareness and physician education initiatives to improve the knowledge of health care providers and the public regarding clinical and surveillance practices for Lyme disease and other tick-borne disorders.

(i) Authorization of Appropriations- There is authorized to be appropriated to carry out this Act, $250,000 for each of fiscal years 2006 and 2007. Amounts appropriated under this subsection shall be used for the expenses and per diem costs incurred by the Committee under this section in accordance with the Federal Advisory Committee Act (5 U.S.C. App.), except that no voting member of the Committee shall be a permanent salaried employee.

SEC. 4. AUTHORIZATION FOR RESEARCH FUNDING.

There is authorized to be appropriated $10,000,000 for each of fiscal years 2006 through 2010 to provide for research and educational activities concerning Lyme disease and other tick-borne disorders, and to carry out efforts to prevent Lyme disease and other tick-borne disorders.

SEC. 5. GOALS.

It is the sense of the Congress that, in carrying out this Act, the Secretary of Health and Human Services, acting as appropriate in consultation with the Director of the Centers for Disease Control and Prevention, the Director of the National Institutes of Health, the Committee, and other agencies, should consider carrying out the following:

(1) FIVE-YEAR PLAN- It is the sense of the Congress that the Secretary should consider the establishment of a plan that, for the five fiscal years following the date of the enactment of this Act, provides for the activities to be carried out during such fiscal years toward achieving the goals under paragraphs (2) through (4). The plan should, as appropriate to such goals, provide for the coordination of programs and activities regarding Lyme disease and other tick-borne disorders that are conducted or supported by the Federal Government.

(2) FIRST GOAL: DIAGNOSTIC TEST- The goal described in this paragraph is to develop a diagnostic test for Lyme disease and other tick-borne disorders for use in clinical testing.

(3) SECOND GOAL: SURVEILLANCE AND REPORTING OF LYME DISEASE AND OTHER TICK-BORNE DISORDERS- The goal described in this paragraph is to accurately determine the prevalence of Lyme disease and other tick-borne disorders in the United States.

(4) THIRD GOAL: PREVENTION OF LYME DISEASE AND OTHER TICK-BORNE DISORDERS- The goal described in this paragraph is to develop the capabilities at the Department of Health and Human Services to design and implement improved strategies for the prevention and control of Lyme disease and other tick-borne diseases. Such diseases may include Southern Tick Associated Rash Illness, ehrlichiosis, babesiosis, and other bacterial, viral, and rickettsial diseases such as tularemia, tick-borne encephalitis, Rocky Mountain Spotted Fever, and bartonella, respectively.

SEC. 6. DEFINITIONS.

In this Act:

(1) The term `Committee' means the Tick-Borne Disorders Advisory Committee established by section 2.

(2) The term `Secretary' means the Secretary of Health and Human Services.

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